The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Wednesday, October 11, 2006

Fry's now seems inclined to try to settle before I tell a whole courtroom full of people about their questionable practice of selling an $800 computer to satisfy a $0 mechanic's lien.

The other case, they haven't made any attempt to contact me to try to settle. When we left off, I was told that I needed to apologize to them and thank them for the actions that resulted in my being evicted from my own home.

Well, fortunately, I am a compulsive saver, and I still have the e-mails written immediately after that document how her story kept changing.

It'll be interesting to see how the judge reconciles the fact that they lived with me for months and tried to guilt me into letting them stay much longer, with the later story that I shriek hysterically at her to the point she's afraid to be in the same room with me. If I'm that awful to be around, then why would they have spent their last few weeks living here trying to persuade me that I'm going to die if I don't let them stay here rent-free forever to take care of me?

I'm off tomorrow to get the police report that will prove exactly what she told the police to convince them that the only reason I wouldn't answer the phone would be a medical emergency. Then I can dispute each one of her lies to the police and prove that the judge cannot believe anything she says. I have the e-mail proving that she was told I had a babysitting job, which gives a reasonable explanation for why I wouldn't be home for 2 hours; so she can't argue that I am home 100% of the time -- she sent a response to that e-mail proving that she read it. And anyone with half a brain knows that if you've finally gotten a fussy baby to sleep, you're going to turn off the cell phone so baby doesn't wake up when it rings.

Basically, the only way she can possibly convince the judge that she acted as a "reasonable person" is to persuade him that she got her college degree out of a Cracker Jack box and actually has an IQ in the moron range.

Tuesday, October 10, 2006

MY RESPONSE (some of which was printed in the Fall issue – this is the complete text)

Thank you for printing Nancy Klimas' article on the facts behind CFS.

There has been a decidedly misogynistic view of this disease from the very beginning. I was told in 1987 that my whole problem was that I wanted to be a housewife and therefore "resented my husband making me work". Obviously, the doctor didn't know me very well ... who "made me" start my own business when I was 14? Or my second business at 18? Or my third a couple years before falling ill?

When I was a child, I played Office, not House; as a precocious feminist, the one thing I never wanted to be was a housewife. In fact, the arrangement was that I would work full-time while my husband finished grad school, doing only unpaid/underpaid field work toward his degree. Quite simply, he didn't earn even enough to pay the rent, much less food, utilities, medical bills.... If I had some deep-seated desire to be a housewife, I would have married someone with a good job, not a full-time student, whom I'd agreed to support for several years.

In 2000, a much younger (but no more open-minded) doctor attributed my "refusal to get better" to not wanting to work and made nasty comments about his false assumption that every divorcee applies for alimony. He was so convinced that I was simply too lazy to work that he falsified my records to sabotage my attempt to get Disability benefits, and taunted me "if you're able to get to my office, you're able to get to a job", oblivious to the fact that I had been fired for diligently getting to a job that I couldn't perform once I got there.

As Dr. Klimas notes, when anti-depressants made me sicker, it was not the doctor's fault for giving me something my body didn't need, but my fault for "not wanting to get well and return to work." Return to work? I'd been working freelance ever since losing my full-time job; I had bills to pay and couldn't do it if I didn't have some money coming in. Whenever I tried to bring up the problems I was having trying to do a little freelance work, he changed the subject. "Don't confuse me with facts, my mind is already made up."

In fact, one of the easiest ways to differentiate depression from CFS is the patient's reaction to exercise: a depressive who is forced to exercise will return energized; a CFS patient will return feeling worse. Before I got sick, I would often walk as much as 20 miles in a day on a weekend ... after getting sick, there were days that walking the 10 feet from the bed to the bathroom required a half-hour nap on the bathroom floor before I could crawl back to bed. Yet, doctors repeatedly attributed my not following instructions to "exercise my way back to health" to some sexist notion that women don't like to get sweaty, rather than listening to what I said about no longer being able to walk more than a few feet before collapsing. (In fact, research has shown that exercise is detrimental to CFS patients; enforced "therapeutic" exercise programs has left some bedridden for years.)

"Osler's Web" by Hillary Johnson carefully documents myriad misogynistic comments and misuse of research funds by CDC/NIH employees. This spring, CDC announced they had found "the first proof of biological basis" for the disease ... disregarding (by Harvard's Anthony Komaroff's count) 2000+ prior research studies showing biological abnormalities. However, it was observed years ago by independent CFS researcher Elaine DeFreitas that CDC was ignoring all the outside research showing organic problems, clinging to their own repeatedly-disproven theory that it was purely psychological. They are still stressing "stress" as the cause rather than the viral onset reported by most patients. (Mine started with a temperature of 105 and delirium for several days; my husband called it "brain fever", and repeated research documenting organic brain damage would seem to indicate that his lay diagnosis was more accurate than the doctors who tried to tell me that I was depressed, anxiety-ridden or work-phobic.)

Despite being aware from the beginning of men and children with CFS in both the Tahoe and Lyndonville epidemics, in the early days, CDC/NIH tried to pass it off as simply "depressed menopausal women". I was only 28 when I got the virus, so I didn't buy into that explanation, and the first book I read about CFS was written by a male patient, who certainly wasn't menopausal.

In the past, a disease with these symptoms was called Myalgic Encephalomyelitis (and still is called that in other English-speaking countries). In 1988, CDC decreed a name change to Chronic Fatigue Syndrome, which had the effect of laypeople believing it was nothing more than fatigue, doctors believing that any fatiguing illness fell into the category, and psychologists latching onto the similarity to the somatic condition "chronic fatigue". In fact, there are many other symptoms that are far more worrisome than the fatigue: at times, I cannot keep any food down for days/weeks on end; I have injured myself repeatedly by fainting; I have had many conversations with other CFS patients where "thing" is used both as a noun and a verb until one of us finally comes up with the correct word that we've all been looking for. This neurocognitive dysfunction, not the fatigue, is the primary reason CFS patients are unable to work successfully. None of this is apparent from the intentionally-derogatory name chosen by CDC.*

In fact, the symptom pattern is so unique that patient support groups can diagnose CFS with near-100% accuracy, while many doctors claim they don't recognize it even when you tell them the diagnosis you received from an expert.

* On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention -- based on the correspondence they exchanged over a period of months -- was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine."